Friday, May 3, 2013

Yes, May is Arthritis Awareness Month. Here's a bit about how our April ended and May is starting

I will warn you now. Some of you may get really sick of me sharing JA related stuff. However, this is a JA awareness page and you need to understand this is a lifelong disease Jordan has. There is no cure. I really, really hate to compare it to cancer, CF, T1 diabetes or any other childhood disease but the truth is, there is very little out there for kids with rheumatic diseases. Read the info on this page on the Juvenile Arthritis Association website.
  Disease*                              Prevalence*         Private Funding (Annual)*

Leukemia                            1 in 25,000          $270m

Juvenile Diabetes                 1 in 500               $198m

Muscular Dystrophy            1 in 10,000           $157m

Cystic Fibrosis                     1 in 2,500             $126m

Ped Rheumatic Diseases   1 in 250                $2m

We get $2 Million in private funding for the most common childhood disease in the United States. Before you tell me this is not a serious disease, tell the mom who is currently fighting insurance BS to get her son the medication he needs to LIVE. I know too many children who have come close to dying because of a complication of systemic JA. Tell the parents who pray every time they see the eye doc that there is improvement in their child's eyes, that this isn't serious. Did you know that even with today's modern treatment, something like 10-12% of children with JA STILL go blind? This is not just a little pain. This disease takes the lives of children and makes them grow up WAY too fast. The proof is in my daughter. If you know her personally, you know she is not the typical 11 year old. She didn't ask for this life. It was given to her because she's strong enough to live it. She denies the pain and refuses meds unless it is way beyond her "normal" pain level. I witnessed this by another JA warrior, L, this weekend.

Juvenile Arthritis, the most common childhood disease, the least funded and no one knows about us.

Please consider donating to the JAA this month in honor of that JA kid you know and love. Or, in honor of the one you don't know about but lives with this devastating diseases. *1 in 250 children.* I guarantee you, Jordan is not the only kid you know with this disease.
As our April went out and May came in, we've spent hours at different doctors with Jordan. On April 19 I took J in to the ped, Her regular ped was booked so I agreed, once again against my better judgement, to see another doctor. I was told she was having asthmatic symptoms. That her inhaler and 5 days on prednisone would help. Day 5 was April 23.  Jordan was having trouble breathing AND the poor kid had a migraine that took away her peripheral vision in her right eye. She had numbness in her face and hand. Now, as uveitis parents, and a mother with APS, antiphospholipid syndrome, I immediately took her to urgent care. The things that were running through my mind were terrifying.
She missed her first choir performance because she was sitting in urgent care hooked up to IV fluids, antibiotics, benadryl and zofran. She was taken in as soon as we got there, labs were ordered, we  got the nebulizer going and IV hooked up all within 15 minutes.  Chest x-ray was done once she was a little more stable.
This may seem extreme to some, but this is the life of a family with juvenile arthritis. A doctor who believes a child may just have allergies or asthma but doesn't understand that something as common as that, can land a child like mine in the hospital. Thankfully, Jordan knows her body well enough to know when something is off. When she came home on Tuesday, she told me she needed to go to the doctor. When her vision started going, we were out the door in about 5 minutes. 
I can't say enough about doctors who don't think I'm a paranoid mother. I know my children and they know their bodies. I've been blown off by doctors who think I'm overreacting or that I WANT her to be sick. Yes, I want my baby laying in a bed hooked up to all these things, miserable. If you've never had to sit there with your child in the hospital, consider yourself lucky. I've done it a few times with both kids and it will never get easier.

As I watched Jordan finally sleeping peacefully I thought about a lot of things. Of course, WHY???? is always a big one. It's something I'll never know. Did I give this to her? Could it have been prevented? She is my little clone, so of course, I think about how alike we are and how many diseases we have in common. Then, my thoughts turn to the other JA kids who are in the hospital for weeks at a time. To Jess, who is this AMAZING young lady who can't catch a break to save her life. Jess is who I want Jordan to be like as she gets older. She's determined to make a difference in the world. I believe she will. Em, Dakota, Parker.... the list goes on and on and on but you don't know that because there are no telethons for JA. There are no sad commercials for OUR kids like there are for the kids at St. Jude. I know children who have cancer and I know families who have lost their child, and I'm not discounting their disease. NO CHILD SHOULD HAVE TO SUFFER DAILY OR LOSE THEIR CHILDHOOD TO ANY DISEASE. THEY ALL DESERVE A CURE.
Remission is possible but not likely for Jordan because she was treated so poorly in the beginning. Her labs look amazing, eyes are clear. The little ones I know, are in medicated or UN medicated remission. The older kids like J, not so lucky. Early and aggressive treatment is KEY and I've seen that with my own eyes. E and Bev are doing great. They were put on MTX almost immediately. Here we are a few years later, both girls are weaning meds. Am I jealous? A little. See, Jordan was the same age the girls were when they were diagnosed. Had Jordan been treated by a competent pediatric rheumatologist from day one, perhaps she'd be in remission too. When Jordan's eyes became involved it's a no brainer to add systemic meds. Of course, hindsight is 20/20. 
We end our April at an amazing event hosted by Teri Hatcher, her Celebrity Yard Sale. Jordan was well enough to go AND work a booth! She kicked butt! Jordan met 2 older JA girls and they gave Jordan HOPE that she will still be able to be whatever she wishes to be in the future. And she won't be short ;)

Recognize anyone? 
L to R
Me, Katie, (JA advocate), Mel, (fellow RA bada$$ and SoCal Rheumatoid Arthritis and Autoimmune Support Group leader) Teri Hatcher, Britt, (TheHurtBlogger) Alexa, (fellow JA advocate)
Jordan, (you all know) and Brielle. One of our friends who came out to support Jordan!

Jordan and Teri!

 Mel, J and Britt

We even put Matthew to work!

Some of the best gimps, volunteers and friends a girl can have. I will never be able to tell you how much it meant to me to have you three come out. I'm missing a few in this photo, Katy and Jena, You know I love you guys and I would be LOST without both. 

Matthew and Teri

 Matthew and Jena, who finally graced us with her presence ♥

Me and my Bub. The best son a mother could ask for! 

And that guy standing behind me in the black LA Kings shirt, that's my husband. He worked his butt off all day too and had to be nice to people ;) My aunt and uncle also came out and worked from 7 to 7. As did my friend Heather, Brielle's mom. I know there are a few who really wanted to be there for us but were unable to make it. Don't worry, this was just the first event. I will be harassing you again :)
This was the first BIG event for JAA and I'd like to say it was a success but I don't know for sure. I do know that I took every chance I had to educated someone about JA. As did Matthew. 
This is the result of being on my feet all day Saturday. I'll do it again, and again, and again until there is a cure.  

Again, thank you for everything. All the prayers as J was sick, all the help on Saturday and always keeping out family in your thoughts and prayers. Off to begin out May at the doctor to see if J's lungs are clear so she can have her infusion on Monday! YAY!!!

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